1. < Neuroendocrine Tumors (NETs)

Flushing after NET surgery

Posted by pavlina60 @pavlina60, Feb 20, 2023

Hi! I had pancreatic NET surgery on Feb.1. Recovering nicely at home. Never had flushing before surgery. Now I experience flushing almost every day. Should I be worried? I have the tumor removed as well as part of the pancreas, gallbladder and spleen, multiple liver metastasies, plus total histerectomy.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2023

Hello @pavlina60

Flushing can be a sign of carcinoid syndrome. Here is a video explaining some of the symptoms of Carcinoid Syndrome, as well as some of the treatments. When you meet with your oncologist next month, it would be good to mention the flushing. Many members on Connect have had these symptoms and they have been treated successfully with meds.

REPLY
cindyarq23 | @cindyarq23 | Mar 12, 2023

I had surgery on Feb 7 to remove LLL endocrine carcinoid. I had some flushing but since the surgery my flushing seems to have increased. Any help would be appreciated on why this could be happening or what I should do.

Thank you

Cindy

REPLY
2 replies
pavlina60 | @pavlina60 | Mar 13, 2023
In reply to @cindyarq23 "I had surgery on Feb 7 to remove LLL endocrine carcinoid. I had some flushing but..." + (show)
@cindyarq23

I had surgery on Feb 7 to remove LLL endocrine carcinoid. I had some flushing but since the surgery my flushing seems to have increased. Any help would be appreciated on why this could be happening or what I should do.

Thank you

Cindy

Jump to this post

Cindy,
I had surgery of pancreatic NET on Feb.1. No flushung before, but have a lot after surgery. If someone knows more about it, please share!

REPLY
1 reply
cindyarq23 | @cindyarq23 | Mar 14, 2023
In reply to @pavlina60 "Cindy, I had surgery of pancreatic NET on Feb.1. No flushung before, but have a lot..." + (show)
@pavlina60

Cindy,
I had surgery of pancreatic NET on Feb.1. No flushung before, but have a lot after surgery. If someone knows more about it, please share!

Jump to this post

Thank you for sharing.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 15, 2023
In reply to @cindyarq23 "I had surgery on Feb 7 to remove LLL endocrine carcinoid. I had some flushing but..." + (show)
@cindyarq23

I had surgery on Feb 7 to remove LLL endocrine carcinoid. I had some flushing but since the surgery my flushing seems to have increased. Any help would be appreciated on why this could be happening or what I should do.

Thank you

Cindy

Jump to this post

Hello @cindyarq23 and welcome to the NETs discussion on Mayo Clinic Connect. You mentioned in your first post that you had, "LLL endocrine carcinoid." I'm not familiar with the "LLL" could you please explain what that means?

I have had three surgeries for carcinoids in the upper digestive tract and while I've not personally had flushing, I know that it is common and is often part of what is referred to as "carcinoid syndrome."

Here is a video regarding carcinoid syndrome.
--Carcinoid Syndrome


Has your doctor offered you any meds to help with the flushing?

REPLY
2 replies
cindyarq23 | @cindyarq23 | Mar 15, 2023
In reply to @hopeful33250 "Hello @cindyarq23 and welcome to the NETs discussion on Mayo Clinic Connect. You mentioned in your..." + (show)
@hopeful33250

Hello @cindyarq23 and welcome to the NETs discussion on Mayo Clinic Connect. You mentioned in your first post that you had, "LLL endocrine carcinoid." I'm not familiar with the "LLL" could you please explain what that means?

I have had three surgeries for carcinoids in the upper digestive tract and while I've not personally had flushing, I know that it is common and is often part of what is referred to as "carcinoid syndrome."

Here is a video regarding carcinoid syndrome.
--Carcinoid Syndrome


Has your doctor offered you any meds to help with the flushing?

Jump to this post

LLL is left lower lobe. That’s where my endocrine tumor was located.

Cindy

REPLY
cindyarq23 | @cindyarq23 | Mar 15, 2023
In reply to @hopeful33250 "Hello @cindyarq23 and welcome to the NETs discussion on Mayo Clinic Connect. You mentioned in your..." + (show)
@hopeful33250

Hello @cindyarq23 and welcome to the NETs discussion on Mayo Clinic Connect. You mentioned in your first post that you had, "LLL endocrine carcinoid." I'm not familiar with the "LLL" could you please explain what that means?

I have had three surgeries for carcinoids in the upper digestive tract and while I've not personally had flushing, I know that it is common and is often part of what is referred to as "carcinoid syndrome."

Here is a video regarding carcinoid syndrome.
--Carcinoid Syndrome


Has your doctor offered you any meds to help with the flushing?

Jump to this post

No neither surgeon has offered me any type of meds for this.

Cindy

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 15, 2023
In reply to @cindyarq23 "No neither surgeon has offered me any type of meds for this. Cindy" + (show)
@cindyarq23

No neither surgeon has offered me any type of meds for this.

Cindy

Jump to this post

@cindyarq23

Hi Cindy,

If you watch the video the doctors speak of meds that help control the flushing. You might inquire of your oncologist about one of these meds and see if you can give it a try. It might be helpful.

Are you seeing a NET specialist?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023
In reply to @cindyarq23 "No neither surgeon has offered me any type of meds for this. Cindy" + (show)
@cindyarq23

No neither surgeon has offered me any type of meds for this.

Cindy

Jump to this post

@cindyarq23 and @pavlina60, you might also find this related discussion in the NETs support group helpful:
- Neck and face red flushing https://connect.mayoclinic.org/discussion/neck-and-face-red-flushing/

REPLY
1 reply
cindyarq23 | @cindyarq23 | Mar 25, 2023
In reply to @colleenyoung "@cindyarq23 and @pavlina60, you might also find this related discussion in the NETs support group helpful:..." + (show)
@colleenyoung

@cindyarq23 and @pavlina60, you might also find this related discussion in the NETs support group helpful:
- Neck and face red flushing https://connect.mayoclinic.org/discussion/neck-and-face-red-flushing/

Jump to this post

Thank you. Very helpful information

REPLY
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